“Each day is a day working towards recovery and finding the strength I never knew I could have.” – Maria
When were you first diagnosed with ME/CFS/Fibromyalgia?
1998
What was your life like before you first fell ill with ME/CFS/FM?
Pre CFS – danced 6 nights a week, worked as a chef, played soccer, went snow skiing, water skiing, camping, bushwalking
What do you miss the most since having ME/CFS/FM
Independence. Being able to work, drive, be spontaneous, plan things, get up early, see family, go on trips by myself.
Describe your worst day with ME/CFS/FM
Don’t have the energy to eat, get up, go back to bed, do that all day. Want to be active with every fibre of my being, my being feels like it has been injected with lead in every vein.
Describe your best day with ME/CFS/FM
A couple of hours out with friends at dinner/lunch, live music.
Describe your typical day with ME/CFS/FM
Half an hour of study, some jigsaw, journal writing, sitting outside in the courtyard with a tea and the newspaper.
What would you *most* like the world to know about living with ME/CFS/FM
It’s real. It’s like being in a waking coma every day, it’s pain, exhaustion, wanting to sleep, too exhausted to sleep. Wanting a “normal” life, to play, to work, to love, to be part of life and all it’s amazingness.
Anything else you would like to share?
I will never give up hope. Each day is a day working towards recovery and finding the strength I never knew I could have. It’s never taking anything for granted. It’s the hardest life lesson tinged with the beauty of self-awareness and the appreciation of being alive.
This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.
Please consider supporting important research by making a donation to my JustGiving page and definitely share this post. Thank you.
Thank you so much, Mike! I hope it was a great day of walking for you, and that every day has been wonderful, and the weather has been behaving! I walked 1.5kms today through a rainforest with my walking cane with many rest stops in honour of the wonderful thing you are doing, and for each one of us who is surviving this horrible disease. Our strength knows no limits. Thank you again, kindred spirit. x
Mike, thank you for doing this. Much love and appreciation from the mom of a young person 6 years into ME/CFS.
It was an honour and I feel very humbled by all these messages of encouragement and appreciation.